One way is to survey patients and caregivers about their needs, then share the results with officials so their decisions can be based on facts rather than conjecture.

For the last three years, Eurordis-Rare Diseases Europe — a Paris-based alliance of more than 800 patient organizations — has conducted the Rare Barometer Program, whose reports feature straightforward, reader-friendly analyses, and colorful graphs and charts.

More than 3,000 people, 60% of them patients, typically take part in these surveys. They represent about a third of the 10,000 patients, family members, and caregivers now in the Eurordis database.

Senior manager Sandra Courbier and research executive Erwan Berjonneau spoke about the program with BioNews Services — which publishes this website — at the Eurordis annual membership meeting, held recently in Bucharest, Romania.

“A number of politicians have quoted the results of our surveys” in pushing for specific rare disease policies, Courbier said. The reports also help researchers understand how patients want to participate in studies, including clinical trials, while raising public awareness of rare diseases.

Europeans make up the vast majority of the 10,000 people in the database, led by France (1,400) and Germany (1,000). The U.K., Spain and Italy each have 800 patients in the database. Non-European countries, such as the U.S., also are represented.

“All of the information shared with us is confidential,” she said. “It is used to create a collective analysis, and is not shared with anyone other than the Rare Barometer team.”

Eurordis also has developed relationships with universities conducting similar research. For example, she said, it is teaming up on a survey with Cardiff University in Wales.

To ensure the widest possible dissemination of results, Rare Barometer publishes its surveys and reports in 23 languages. And while it covers all rare diseases rather than selected ones, the team will break out findings on a particular disorder if a member organization requests it. It also will break out results by country, age, and other factors if a member asks for more detailed analysis.

The team conducts two to three surveys per year. One in 2017 focused on the day-to-day challenges of rare-disease patients and caregivers. One of the biggest challenges, the survey found, is an often-experienced one: requirements that patients visit multiple different healthcare, social service, and local support facilities in a short time period. Other challenges include mental health issues, and achieving a balance between work and family life.

Erwan Berjonneau, research executive of the Rare Barometer Program. (Photo courtesy of Eurordis)

Hal Foster is a veteran journalist at the Los Angeles Times and other news organizations in the United States and Japan, and a longtime journalism professor.
In addition to the LA Times, he worked at the Portland Oregonian and the Seattle Post-Intelligencer, was executive editor of Pacific Stars & Stripes in Tokyo, and wrote about the war in Ukraine for USA Today.
He has a Ph.D. in journalism from the University of North Carolina, and has taught in the United States, Kazakhstan and Ukraine, where he was a Fulbright scholar.

Hal Foster is a veteran journalist at the Los Angeles Times and other news organizations in the United States and Japan, and a longtime journalism professor.
In addition to the LA Times, he worked at the Portland Oregonian and the Seattle Post-Intelligencer, was executive editor of Pacific Stars & Stripes in Tokyo, and wrote about the war in Ukraine for USA Today.
He has a Ph.D. in journalism from the University of North Carolina, and has taught in the United States, Kazakhstan and Ukraine, where he was a Fulbright scholar.

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